bijay: amitriptyline / Elavil weaning problems

[bijay]

@ChessieCat Thanks for the suggestion but it doesn’t use batteries, it plugs in.

[Toast]

Wondering how you are doing. Have any of your symptoms seen any improvement? Sending love and support. 

[bijay]

Hi @Toast  So lovely of you to ask after me.

 

There have been some improvements.  I have very little of the muscle twitching/internal vibrations that started after reinstating the amitriptyline.  I have been sleeping  pretty well lately, and it doesn't seem that I have sleep disturbances any more after lowering the dose.  Little to no anxiety.  My voice is not so raspy and dry.   

 

During the summer I had a very bad period of nausea, diarrhea, and stomach pain.  I also had some eye problems, with symptoms of vitreous detachment (I had that also during my first too-fast taper).  But those are better than they were.   My doctor ran some tests recently, and the elevated level of ferritin I have had through most of this withdrawal (high ferritin is indicative of inflammation) is back in the normal range. 

 

Unfortunately, the main problems with my gut and burning mouth are not improved, and my mouth actually seems worse lately.   (I could be losing the anesthetic effects of the amitriptyline at this low dose.)   If I could eat more, maybe gain a little weight or expand my diet, that would mean the world to me.  But I have to be prepared to wait until I come off it completely before the real healing can begin.  

 

Most of the day I can focus and read, work on the computer.  I meditate.  Even the crazy events in the news are a good distraction for me.  But there are times when I become sad and despondent, thinking how can it be possible that this small amount of drug is doing this to me?  I know there is so much evidence from the past indicating that this stuff is poison to me, that after the first (too fast) taper I became sensititized to it.  (This forum was the first place where I heard about that possibility.)   But when I am especially sick, or sometimes reminded of how life used to be so easy, I fall into negative thinking:   I am foolish to believe that this small dose is wreaking all this havoc, or my gut and stomach are damaged to the point where I can't get through withdrawal.  I really have to fight that tendency to basically feel sorry for myself.

 

Thank you for prompting me to update where I am at the moment.  Several times I've started to write something, but never finished.  This has helped to clarify my thinking.

 

Love and support to you too 😊

 

 

 

 

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[Toast]

@bijay, I am so happy to hear many of your stomach and eye symptoms have improved since the summer! But I am so sorry to hear your burning mouth and gut symptoms are still so awful. I definitely can relate about falling into the negative thinking, it is so easy to fall into negative thinking when we have to suffer so constantly for so long. Your journey may still take some time, but one day I believe all of your symptoms will improve, and you will heal ❤️ . Every day you make it through despite your symptoms is an investment in this future. I will be rooting for you!

[bijay]

@Toast  it was great to wake up today and see your post.  I will try to remember your wise words as to how all of this is an investment in the future.

 

 I look root for you too as you start your journey in this.  Peace.

[bijay]

I've just learned that my mother was switched to another blood pressure medicine, metoprolol, which has started to cause her to hallucinate.  My husband takes this same drug with no problem, but it angers me that she has had to go through this scary experience at her age.  Fortunately my brother figured out what was going on, otherwise they probably would have tried to put her on some antipsychotic.  It is very easy to fall into the trap of the prescription cascade, where drugs are prescribed to treat side effects of other drugs.

 

Fortunately the hallucinations are gone, but she is paranoid now about how people she saw could have gotten into the house.  She also blames my brother for poisoning her.  I hope this passes soon.  

[Toast]

That is really upsetting I am glad you guys were able to figure out that it was due to the blood pressure medication before the doctors prescribed another medication. It is really good you guys are able to look out for her. So sorry this happened.

[bijay]

@Toast  Thank you so much for your kind words. 

[bijay]

The last couple of months have been so damned hard.  The physical symptoms of this have been draining me of hope.  After the holidays I got to the point where it felt like the food I was eating was just not getting through me, and the pain and nausea that caused was tremendous.  I had a recurrence of that last night, which kept me up and had me worried, although today is better.  Five days ago I had an incident where after lunch it felt like my mouth was in a vise - this was real pain, not the burning sensation I've had with burning mouth syndrome, which of course I still have.    

 

I am down from 10 to 2.1 mg. of amitriptyline, and it makes me wonder if getting off this stuff will have much of an impact, since these physical symptoms are so bad.  Has anyone else gotten worse as they go down in dose?   

[SurreyGuy]

Hi @bijay, have you considered switching to liquid taper? My condition greatly improved when I switched from dry taper (basically using a scale and shaving off pills) to liquid taper using milk. I suspect that with dry tapper I was not getting an accurate amount of the active ingredient and my central nervous system could not stabilise... Now my central nervous system can stabilise, usually 2 weeks after a taper.

SG 

[bijay]

Hi @SurreyGuy That is a very good suggestion, and I wish I could do that.  The issue for me is that I have burning mouth syndrome, which even goes down into my throat.  Taking a liquid version of the amitriptyliine would greatly exacerbate that - at this point I cannot even put any table salt on my food, as it makes my mouth and chest burn and swell.  The worst of this started when I reinstated the amitriptyline, and I think it is definitely contributiing to the problem.

 

I do have a very accurate scale (it is readable to 0.1 mg) so hopefully that helps in terms of getting a consistent dose, although the pills are small to begin with.  Weighing out 2.1 mg translates to a total pill weight of 0.0201 mg.

 

Do you have physical symptoms associated with reducing the amitriptyline?  The first time I tapered way too fast from 10 mg. and wound up with cholinergic rebound, including high stomach acid where I would wake up with acid in my throat.  It has definitely messed up my digestive system. 

[SurreyGuy]

Yes, I do have numerous physical symptoms but I can't say for sure if they are due to the benzodiazepine cold turkey imposed by my GP or if it is due to the amitriptyline taper...

This time, I'm going really slow with the amitriptyline. I probably have another 1.5 to 2 years of tapering depending on bad my symptoms are.

One thing for sure, I will celebrate the day when I'm drug free!

[Toast]

@bijay , wanted to say I'm sorry your symptoms have gotten worse lately. I hope you can hang in there and I hope your symptoms will improve soon! Sending love and support. You will make it through this!! ❤️

[bijay]

Hi @Toast, good to hear from you.  I am hanging in there, sometimes by the skin of my teeth.

 

A week ago I hurt my back, which turned out to be a good thing since I couldn’t sit long and had to be more active.  I felt like my stomach was working better with moving around more.  My back still gets stiff, but fortunately is much better.

 

I have been doing some things lately to keep myself distracted, because there are times, honestly, where I think too much and things go downhill very quickly.  So I found this website and started learning geography.  When I need distraction I recite the countries in Europe or Africa - that’s how bad things can get!

 

It sounds from your last post that you have had a rough time lately after feeling a bit better earlier this year.  You are so sweet to reach out when you yourself are also having symptoms.  I am so sorry things can be so unpredictable, and we have to dig deep sometimes to find a way through.  I am wishing with all my heart that things get better for you soon.  Let’s hang on and keep the hope going, one day at a time.  Love to you too ♥️

[Toast]

@bijay, sorry to hear that you hurt your back   but glad you have managed to make the best of the situation and that it has actually helped in some ways! And glad you are staying busy and in a productive way, even. Your mention of learning the countries is such a good distraction strategy and I might steal that! but sorry to hear that things have still been difficult for you

 

Thank you so much for your well wishes to me -- I am hanging in there! and things have even improved a bit for me in the past month. I hope the same for you ❤️  Agreed that we have to keep the hope going, one day at a time. ❤️ 

[bijay]

Things seem to be quite bad now, because my weight is still so low (97 lbs.).  I can have a lot of pain and cramping just from my current bland and limited diet, and I am implicably sensitive to virtually everything I try:  An ayurvedic skin cream caused extreme nausea and wheezing, even short exposures under a sun lamp caused my stomach/gut to "close up" (I don't have any better way to describe it) to the point where eating was excruciating.  I tried the sunlamp twice because I was sure the first time must have been a fluke, but it happened both times.  This week I even got very sick after trying salmon again.   I hate to discuss these situations with doctors because it is so outside of what is "normal" and they really can't do much about it anyway.  After a heart-to-heart with my internist she called my situation "failure to thrive", which is hard to hear but true. 

 

I talked with a palliative care doctor who would like me to try parenteral feeding to rest my gut and maybe improve my weight and nutritional status.  This is basically feeding all nutrients into a vein, and it's a pretty extreme measure.  I am almost certain from my past experiences, where I couldn't tolerate even small doses of IV vitamins, that this would be a mistake.  I know she is well-intentioned, so I said I would think about it, and she is trying to set up a consult with a dietician/GI specialist.  But I think this is a risky desperation move that would probably only make me sicker, and I don't want to get so sick that I cannot advocate for myself, or even worse, wind up in some care facility.  My husband would problably not allow that, but I would rather cut off my right arm than put him in a position of becoming my full-time nurse.

 

I take only 1.1 mg. of amitriptyline now (down from 10 mg.) and wonder if getting off of it completely will have any benefit for my burning mouth syndrome and gut issues, which went into overdrive when I reinstated the drug.

 

About a month ago I started to take my pills during the day instead of at night.  That way I can take them with as much food as possible.  I think the state of my digestive tract is such that even the small amount of amitriptyline and Klonopin I take are irritating my stomach and gut.   I immediately got a constant, dull headache as a result, although that went away two days ago.  A positive result is that I feel like I have less upper body symptoms; definitely less inflammation and irritation in my chest and throat, a bit more moisture in my mouth, slightly less burning mouth.  I am sleeping pretty well, and feel like it is a lighter, more natural sleep, although I am still prone to waking up with stomach pain or nausea.  The Klonopin definitely makes me pretty tired during the day.

 

I want to say no to the parenteral feeding.  How many times I have put my trust in well-intentioned doctors, with disastrous results?  But I see this glimmer of hope in people around me that this may be the thing that turns me around.

     

[Arthur]

Tough decisions.. you are alive and your husband  loves you so that’s a win..  you need nutrition… you have shown me great kindness..  I really want you to beat this thing in the end.. makes me sad to kind people suffer so.. sometimes there is only faith.. you say you reacted to multivitamins? Was it the digestion of them that bothered you or a reaction to the contents?

[bijay]

Two years ago I tried vitamins when testing showed I had some deficiencies.   Oral vitamins give me a lot of nausea, so I went to an IV clinic where they used very low doses (basically the RDA) of thiamine and riboflavin solutions going through a vein in my arm.  Afterwards I would go home and fall asleep, feeling ill and tired.  By my fourth trip there I looked and felt so bad they refused to continue treatment.  Then my doctor had a compounding pharmacy send me liquid vitamins I could self-inject.  The same thing happened.  Finally I started eating scrambled eggs everyday, and my vitamins levels, although on the low side, went back into range.  So I look back at these sorts of experiences and just can't see how I can tolerate getting all my nutrition (carbs, protein, vitamins, minerals, etc.) through a vein.   Eating is hard for me but it doesn't come with all the additional risks (like infection) this would have.

 

It also makes me profoundly sad that there are so many people here who suffer.  I don't know what I would have done without this website, showing me that I was not the only one reacting so badly to these drugs, that it wasn't just in my head. 

 

Thank you also so much for your kindness.  Have a good night ...    

[Arthur]

All you can go then is keep tapering.. slow and steady.. o too eat eggs daily as they are very nutritious.. I’ve been trying to hold till after o get this surgery but when o try to fall asleep I have these seizure type fits that wake me .. adrenaline surges.. also feels like my body is constantly shaking.. it weird.. hope today brings you some calm and laughter even if just alittle bit.

[Arthur]

Also you many want to start this.. it is Spiirulina.. it is a super food. Very Nutrient dense.. they say you could live on it in enough quantity.. as with everything start small and work up.. I take 5 a day..

[bijay]

Thanks for the spiruina recommendation.  My stomach recently has not liked any sort of supplement, although in my previously healthy life I would have tried it in a second.

 

I have also had that sensation of my body constantly shaking.  I even had visible muscle twitching in my legs too, especially after any walking or exercise.  It started when I reinstated the amitriptyline, and has very much improved as I tapered to lower doses.  I truly do think my body became sensitized after my first attempt to taper, and I've been paying for it ever since.  These drugs mess with the whole nervous system, not just the brain.

 

I am sorry about the adrenaline surges at night.  Are those the same as the cortisol spikes or brain zaps people describe?  Maybe there are some self-care suggestions for it on the forum.

 

I hope you can find a little joy and calm today too. 

 

[Arthur]

The spirulina is a food.. not saying that it will agree with you..it’s blue green algae.. you can grow it…. I would look it to its histamine rating tho .. this crap is so crazy.. so many different disabilities.. so many different reactions..

[Arthur]

I also get the muscle twitches after is exercise.. I need to start to taper as this drug has never helped much with pain and has only made me stupid and caused side effects.. may I ask at what rate you have tapered and what have you tapering side effects been so that I my prepare.. I’ve only made one cut out of fear.. 

[SurreyGuy]

Amitriptyline interferes directly with quite a few different neurotransmitter receptors (and even more different receptors, indirectly, via the amitriptyline's main metabolite, nortriptyline). No wonder it causes so many symptoms upon withdrawal.

[bijay]

@ArthurI have tapered between 5-10% per month, depending upon how I feel.  

 

One thing to remember with amitriptyline is that it actually breaks down into a second tricyclic drug called nortryptyline, which has a longer half-life.  So you may notice two cycles of withdrawal symptoms because of it.  For me, when I first drop down, I may actually feel a bit better with more moisture in my mouth, then 5-7 days later I have a period of worse nausea, diarrhea and some sleep disruption.  I have also experienced some eye problems in the form of vitreous detachment, which caused flashing lights in the periphery of my eyesight. This healed by itself.  Maybe this is due to the fact that amitriptyline increases pressure in the eye.

 

Do you think it might be better to wait after your surgery?  If the surgery can help your pain, that is one less thing you will have to deal with during withdrawal.      

 

     

[Arthur]

My thoughts exactly.. I just hate being on it but commons sense says to wait..

[bijay]

With the smalll slice of amitriptyline I'm taking now, I sometimes wonder if I should just chuck it and stop taking it altgoether.  It is very tempting, given how desperate I am to get off this stuff.  But it is very hard to make good decisions out of desperation.  What I went through the first time around I would not want to repeat on even a small scale.  We've all just got to hang on.

[Arthur]

I have not slept for 3 days after a week of 6 to 7 hrs sleep.. I introduced about 100 mg of vitamin d in the morning about a week ago and have changed nothing else.. I don’t know if I have the strength for this.. all I have is pain in my jaws and deep depression and hopelessness.. I just want to feel well.. also wondering if being around a lot of second hand cannabis smoke and tobacco smoke could be the culprit.. didn’t touch it myself but went skateboarding as that is my outlet and every one park smokes it heavily..

[bijay]

@Arthur Definitely stop the vitamin D if that is the only thing that changed.  That sounds like a small amount but many people here say it can be activating.  
 

You can get vitamin D even from moderate sun exposure.  There is an app called Dminder that can estimate your body’s vitamin d intake from the sun.  Getting D from a natural source may be best in the meantime.

if you were outside you probably did not get much secondhand exposure.  

I am so sorry about the pain you are in.  Has surgery been scheduled yet?

[SurreyGuy]

@Arthur, sleep deprivation is really tough, it's a form of torture, and I really feel sorry for you. I had a sleepless night 2 days ago (before that I had a couple of not so great nights) but it was followed by a very good night. Today, I had the usual anxiety that starts as soon as I wake up and subside towards the end of the day (5pm or 6pm). That one symptom really sucks. I had some very good days (no anxiety at all) and decent nights last week and I hang on to the memory of those good times. That's what keeps me going...

 

Have you considered recording your symptoms in a diary? It's useful when you have a wave: my waves tend to follow a pattern and when I feel bad I can refer to my diary and reassure myself the insomnia symptoms won't last forever.

 

I am on 11mg amitriptyline so I still have a long way to go unfortunately. I sometime want to stop it cold turkey thinking the recovery process will be faster but we all know it's a bad idea (I tried to cold turkey amitriptyline a couple of years ago on the advice of my doctor and it backfired spectacularly and I had to reinstate at 20mg). Slowly is the only way out it seems...

[Arthur]

Yes I will record them.. I have extremely vivid dreams that wake me and I have an extremely difficult time going back to sleep because of my pain as well.. last week I slept thru 5 straight days with 6 + hrs.. I don’t know what gives 

[SurreyGuy]

Yes, sleep during withdrawal can be quite erratic. I wake up on most night, usually once, and I can go back to sleep quickly (5 to 10min). But there are nights when I will not fall asleep at all or when I wake at 2am or 3am and cannot go back to sleep. I hope you get some decent rest.

[Arthur]

@bijay.. after a very hopeless day they called and moved my appointment up 8 days so now it’s in the 20th of September.. this will schedule the surgery.. I believe if I can get some relief for the pain the the withdrawal will be 100 times easier.. fingers crossed.. I need this because life is unlivable at the moment and the only reason I am still alive is because I have a child..

[bijay]

@Arthur  That's fantastic you are on the schedule, and even a bit earlier than planned.  I hope and pray this helps to put you on the road to recovery, my friend. ❤️     

[Arthur]

@bijay just checking in to see how things are going for you.. hope your handling things ok and that your stomach issues are improving if only alittle bit 

 

[bijay]

@Arthur  Thanks so much for checking in - the nausea seems to be better the last couple of weeks.  My last dose reduction has gone pretty well so far.  Lately I am trying to reach out more to my friends and family, which gives my morale a bit of a boost, but I am also torn because I want to shield them from my troubles, which are hard for everyone (including myself) to comprehend.  

 

How are you doing?  Is your surgery still on for the 20th?  If so I will make sure to be thinking of you that day.